And Now, Hospice
Monday, 29 June 2020
As I mentioned a few blog posts ago, you know your time on Earth is winding down when the doctor says you are now eligible for hospice care. He or she makes that determination when your disease is no longer responding to medical attempts to cure it or slow its progress.
(Palliative care includes much of the same comfort care as hospice but also includes continued curative care.)
As of last Friday, I am officially in hospice which consists of an amazingly wide range of care. I will get to that but first, let's cover the most basic nuts-and-bolts questions:
- The goal of hospice is to support the highest quality of life possible for whatever time remains.
- Hospice care is most commonly provided at the patient's home but is also available at hospitals, nursing homes, assisted living centers and dedicated hospice facilities.
- In the United States, people covered by Medicare can receive hospice care if the physician thinks the patient has less than six months to live. Sometimes old people fool the doctors and live longer. Hospice can usually be re-certified for another six months. And another and...
- Hospice is generally paid for via Medicare, Medicaid, the U.S. Department of Veterans Affairs and private insurance. Hospice programs differ, but many offer care based on need rather than ability to pay.
I had expected to go to the hospice offices for the introduction to their services, but no. The nurse came to me as will all hospice providers. For the past couple of months I tire more quickly and easily than before so this was a welcome surprise.
We spent the first couple of hours going through the explanatory binder that is my guide to the service and my care. I have a team now. A large team. A registered nurse who is also my case manager; a physician; an aide who is also a certified nursing assistant, can help with light housekeeping, help with laundry and such other tasks as become necessary, and regularly check my vitals and other indicators.
There are also a medical social worker to help with a wide range of personal and practical issues; a non-affiliated spiritual care counselor; volunteers who can provide companionship and various sorts of non-medical help.
There are more but those give you an idea of how comprehensive this hospice is. The nurse made it clear that all of their services are tailored to my specific needs and desires.
But wait. There is even more I would not have thought of. The hospice now takes care of most of my medications, delivered to my door. In my case, half are paid for by hospice now – they buy in bulk with attendant discounts, the nurse explained.
Others are paid for by my Medicare Part D coverage or by me but almost all are delivered on a regular schedule by hospice.
They also supply all needed medical equipment. Recall that it was Friday I met with the nurse for the first time. On Saturday, my new oxygen concentrator was delivered, hospice arranged for the previous one to be picked up next week by that provider, and the delivery person moved the old concentrator and big emergency tanks to a space near the front door so that I wouldn't need to tackle that. (They're heavy.)
I did nothing but stand around and open the door for the delivery man.
This taking over of the arrangements for drugs, oxygen pickup and delivery, and whatever else becomes necessary in the future is a relief to me. In the past two or three months or so, it has become more difficult for me to organize all the little things as their numbers increase. I manage to get them done but it takes a lot of effort, not to mention the annoyances when things go wrong which tire me.
By the way, my new difficulty in organization affects this blog too. You may have noticed that recently there are fewer items in Saturday's Interesting Stuff. That's because over all these years of doing it, I have probably viewed or read at least a dozen videos or stories for each item I publish.
But I'm slower now, I wear out more easily and have trouble keeping track of them – mostly due to a late-age distraction problem. Hence, fewer items on Saturdays.
Getting back to hospice, that binder the nurse left with me has sections on end-of-life legal documents, lists of best-practices in self-care, charts to track medications, home safety tips, a terrific daily journal where I can note emotional well-being, pain level, body responses, etc.
It's not that I need all these things necessarily or yet but they are there when I want to check something, they are smart and they are valuable.
I'm writing most of this on Saturday afternoon. That oxygen delivery man arrived on time, was friendly, made sure I know how to use the equipment and we had a nice time chatting too.
Later in the day, a different nurse from Friday telephoned to see how I am, whether I needed anything and to give me the name of my nurse/case manager who will visit today, Monday.
In the evening on Saturday, the emergency drug kit was delivered. This is kept in the refrigerator so it is immediately available if I have telephoned with an emergency and can help until the appropriate caregiver arrives.
What all of these people did – the nurse who enrolled me on Friday, the oxygen delivery man, the nurse who telephoned with some information I needed, the drug kit delivery person - was repeatedly remind me that if I need anything, from a serious medical problem to just any old question, to call them.
They are available 24/7 and there is always a real, live person, a registered nurse, to answer the phone.
As much as I appreciate every bit of this, it isn't easy for a woman who has always done everything for herself by herself. Unless I am bleeding profusely, I have always thought of it as an imposition on the other person to ask for help. Just recently, an old friend in New York City gave me a kindly lecture on the fact that she and I share that trait and now I need to let it go.
In just these three days, I already feel a relief knowing there are people who can help me with so much and I seem to be going along with them although I'm not completely comfortable yet.
But I'm getting there. Geez, I guess if you live long enough you learn all sorts of new things.
I don't know if this is an exceptional hospice or if all hospice care is as comprehensive and professional and comforting as this one but, as with the doctors and nurses who cared for me during the past three years, I seem to have landed in the best possible place for these last few miles of my journey.
What I do know for sure is that I have never heard about hospice from people who were familiar with it - family members, caregivers and a couple of patients - in anything but superlative terms.
If you have experience with hospice, do let us know about it in the comments below.
Ronni, I'm so glad you are getting this care! I once worked for a hospice in New York and can tell you that your description of services matches theirs. I'm not sure what modifications have been made to hospice since I left 20 years ago, but I suspect they are mostly business arrangements between the organization and the insurers. My hospice also did fundraising to provide additional services, including a camp for children who lost loved ones, special outings or events for patients, continuous bereavement programs for families, and such.
We are so lucky to live at a time when society understands the necessity for caring for us until the end of our lives, whether or not we have family available or able to do that for us. With help from hospice, I hope you are able to live comfortably and productively for as long as possible. And thank you, again for taking us all along on this walk through your life for the last 25(?) years. We're all the better for it. Much love.
Posted by: Paula Behnken | Monday, 29 June 2020 at 06:20 AM
Hospice has come along way since my MIL in 2003. We never actually got enrolled, as the volunteer who came to the hospital to discuss things with her spoke with me first. Their program was much shorter than 6 months, and when she told me that, as my MIL was still eating (the nurse and I had pretty much force fed her medications mashed into jello that morning), she said that they couldn't accept her because, "she could survive for a month or more if she's still eating." I lost my mind at that point, and answered, "Do you mean she's not dead enough for you???"
A few days later, when MIL told the nurse, "I want to die," the on call doc wouldn't sign the papers for hospice, even though her own doc had signed previously. He said he refused because he didn't believe in euthanasia. That was Friday, and MIL passed on Monday morning, just before her doctor was due to make his rounds.
It's been a while, so I hope our experience was just an aberration. I am really happy for you, that you have landed (so to speak) on your feet with this. I can see that it can be a huge help.
Posted by: Veronica J Prior | Monday, 29 June 2020 at 06:41 AM
This is amazing! Thanks again for sharing all the ins and outs and details!! You are fortunate to have such great care and the caregivers are lucky to have you as their patient. I'm sure you'll make some new friends!
Posted by: Carol | Monday, 29 June 2020 at 06:53 AM
Sounds like you are in caring and watchful hands which is comforting. What I want most for you in addition is to see a peaceful transition at least through the end of January '21 and beyond. Hope that doesn't seem heartless to focus any attention there, but you already know how much love, appreciation, and admiration comes your way. Your comfort is paramount, but you of all people need things meaningful to ponder.
Posted by: Norma | Monday, 29 June 2020 at 06:58 AM
What a long way we've come in forty years or so. In the first class I was sent to to learn fundraising for my not-for-profit employer, one of the other women attending was working with a group of people trying to form what would be one of the first hospices in Chicago. No one else in the room knew what she was talking about, but most of us loved the concept. Others just didn't want to talk about it.
It sounds as though you are connected with an excellent and efficient provider. I've experienced three different ones now, since 2010: one in which care was delivered in a medium-size assisted living facility in the last few days of my father-in-law's life, another in the home of my mother-in-law, at what turned out to be literally the last day of her life by the time she was evaluated as being eligible for services, and the most recent, in a small facility for dementia care, in the last few weeks of my mother's life. All were different experiences, some better than others, but none were bad.
You are starting from a very different point than anyone in my family has, and it will be interesting to follow your experiences as you share them with your readers. I'm sure your reflections will be as honest and insightful as always. I'm glad you're finally getting some respite from all the things that have become increasingly tiring, along with other things that can just elevate your daily life. You probably have much more access to interesting offerings (like harpists who come play soothing music in your home!) than we do here, and I'm hoping you take advantage of a variety of opportunities provided. They will even come in and provide hair care!
I hope that you find this to be the blessing it can be!
Posted by: Cathy J. | Monday, 29 June 2020 at 07:03 AM
Very informative, and very brave of you to write this post. Both my folks went thru hospice, and their experiences were just as good as anyone would hope for. It's a great thing.
Posted by: Tom at Sightings | Monday, 29 June 2020 at 07:03 AM
Thank you, Ronni, for your illuminating words today. I haven't felt well enough to comment for a couple of weeks although Time Goes By is my first 'read' each day...and is a blessing in my life. Today I feel such relief for you I must add a few words. Hospice was a true blessing for us when my husband was in his end times.
I waited too long to even consider it, and regret that. I was simply afraid he, or my children, would think I had given up on him. Yet I was exhausted and feeling desperate. Just basic maintenance of house, meals, laundry, meds, etc is time and energy consuming when one ages more than anyone younger can imagine.
You have covered it beautifully, dear lady. A surprise to me, was the "Spiritual" help. We were not part of any church....sometimes agnostic or atheist, depending on the news, weather, mood, or "moon cycle". :-) We were fans of Ram Dass, Thomas Merton, and the
gifted poets coming into our lives in the 70s. The gentle lady that filled that role adapted to our needs. She was like an old friend to my husband, sitting and chatting, asking about his career as an engineer, our garden, children, etc. He truly looked forward to her visits as did I.
The supplies provided were another unexpected blessing. Not the $$ as much as the shopping, choosing, ordering that is so exhausting to any non-medical person. You won't regret this decision, Ronni, and I have learned from others that it added quality time for some families.
Posted by: Charlene Drewry | Monday, 29 June 2020 at 07:04 AM
My husband had in-home hospice care for 8 months. I can't say enough good things about the help I was given. I could not have managed his care alone. They were always available when I needed them. It wasn't just the care that gave him, but the moral support for me. I can't tell you how much it meant to have someone with advice and support when I was only getting two or three hours of sleep. If your organization is like mine, it should give you ease knowing that help is available.
Posted by: J. Recio | Monday, 29 June 2020 at 07:05 AM
I referred to them as "mom's angels" because it was them that released her of her screams and axiety as she couldnt speak to say she was in physical pain. They had magic medication. If I had to leave, I'd return and they'd be reading to her even when I thought she was comatose. One sitter said , the hearing is the last to go so keep speaking to her so I did to the last breath. Yes, to me Hospice is like a band of angels! I read a book once written Hospice nurses and it was a collection of various patients and their stories. It was such an eye opening book on hiw each of us go in in own way. Let them be your angels as more than ever you deserve so much compassion and care and if this is their gig, they love doing it all for you. Id gladly hold your hand and read to you. 💟
Posted by: Carla Jean | Monday, 29 June 2020 at 07:09 AM
If I were there I would just hold you. God Bless.
Posted by: Marcy | Monday, 29 June 2020 at 07:41 AM
Thank you so much for this description. Your post will encourage others to choose hospice sooner than later. I am a hospice music therapist and I love my work. Hospice is for the living and your post beautifully described that.
Posted by: Cheryl | Monday, 29 June 2020 at 07:44 AM
Than you for sharing your heart in this beautiful post, so very glad you're getting the help and resources you need in this time. My love and prayers go out to you, you're a blessing to all that read your blog. <3
Posted by: Carole Winter | Monday, 29 June 2020 at 07:50 AM
Yay to your new network. 😎
I’m so ridiculously pleased you have this to call on and they are proving so relief giving... xxx ❤️
Posted by: SM | Monday, 29 June 2020 at 07:51 AM
Very glad you had a positive experience with Hospice. I wish more people brought it into their lives sooner. The goal really is to make life better.
I appreciate your posts. Your candor is refreshing and illuminating to us all.
Posted by: Anne Bauer | Monday, 29 June 2020 at 07:57 AM
Hospice really helped my sisters who cared for my mom who passed away last year. They really needed the assistance with all of the care she needed. I watched her struggle to resist help but it was a relief when she let everyone make her more comfortable. You are in my thoughts
Posted by: MaryAnn | Monday, 29 June 2020 at 07:58 AM
Ronnie, Your post made my heart glad. In my 20's and for many years following, I helped begin the first hospice programs in Michigan. We followed with programs for families caring for people with disabilities, and then for families with children who were "medically fragile, and technology dependent."
We began with the medical treatment decisions act, and then all volunteer home care hospice programs, which led to hospital and inpatient based hospice programs. We wrote the first hospice licensure law assisted by Blue Cross.
Maybe you can imagine the medical, proprietary and legislative policy wrangling throughout this time - almost 50 years ago. We've come a long way baby. Unfortunately health care is political so we still have a long way to go in this country! We need to continue to advocate for the kind of care you have and are experiencing, for everyone!
Know that you have helped move the curve with your research, honesty, and stick-to-it-iveness for many many years. Thank you.
Posted by: marian methner | Monday, 29 June 2020 at 08:04 AM
Posted by: Faith Olson | Monday, 29 June 2020 at 08:08 AM
Thanks for sharing such a glowing Hospice 101, usually it is a situation when others are calling Hospice in at a last minute, or hesitate to call them in at all. Maybe it's that we live in Florida where we have so many who are in need of Hospice care. We as a family called them in when my mother in law was in an Asst. Living Facility so the care by her aide, and the place shared with the Hospice group in caring, so sometimes wasn't sure who was doing what etc. She had Alzheimer's and had Hospice care on and off for five years.
Much love to you Ronni, and love your blog ... m
Posted by: Martha K. Backer | Monday, 29 June 2020 at 08:11 AM
As usual, thank you for devotion to your readers even as you begin your final journey. I can only hope I will be as strong. Sending peaceful dreams and warm hugs. 💕
Posted by: Barbara | Monday, 29 June 2020 at 08:12 AM
Hospice nurses were indeed angels who provided wonderful care for my parents and helped me immensely in their final months. After this experience I became a hospice volunteer. I had a patient whose six-month term was renewed many times! We became good friends who looked forward to our weekly visits.
Thank you for sharing your hospice experience, Ronni. I'm glad to hear you have accepted that care.
Posted by: Ruth Marchese | Monday, 29 June 2020 at 08:13 AM
When working in an assisted living facility, I met Hospice workers and was really impressed with their ability to let the patients tell them how they wanted their lives and deaths to be supported, not managed to someone else's dictates. I wish I could have convinced my friend who died a few years ago about the benefits of their help, but she and her husband were still of the mind-set that they wouldn't give up an ounce of their "my-way" attitudes. My other friend who I was with when she died did have Hospice, and I was grateful that the nurse told me that my patting her foot as she died would keep her attention and not allow her to "let go." So I just left my hand on her foot and didn't pat any more. Being present with a dying loved one is important for both of the individuals. I'm sorry to have missed that with my own family.
Posted by: Barb Roger | Monday, 29 June 2020 at 08:14 AM
Those of us who have always prided ourselves on meeting life challenges without outside help often fail to recognize that in accepting help we are giving as much as we receive. All those wonderful hospice providers would not have a job if not for you. Yet, caring for you is more than a paycheck. It is a purpose , a calling, a way to feel good about themselves. And meeting you and others at the end of life enriches them, provides innumerable lessons in living. It is indeed as blessed to receive as to give.
Posted by: Ann Burack-Weiss | Monday, 29 June 2020 at 08:22 AM
Thank you for sharing this. My friend was very happy with hospice in the last months of her life. I am happy that you have a good hospice provider. I so appreciate reading about your life. May you have many good days ahead of you.
Posted by: Sulibran | Monday, 29 June 2020 at 08:25 AM
Good for you, in every sense of the phrase! And thank you to your friend who talked turkey.
To all of us a step behind Ronni: put your directives about hospice care in your living will or whatever your jurisdiction calls that. Put that on top of your desk and cc the family or whoever will be responsible.
Do not depend on verbal directions to anyone. I have seen a lot and cannot believe how well-meaning family can make choices based on what they think is right.
Posted by: Duchesse | Monday, 29 June 2020 at 08:26 AM
Thank you and bless you.
Posted by: Wisewebwoman | Monday, 29 June 2020 at 08:26 AM
Hospice helped my mother when we were in California. They were wonderful, and it was such a relief to have the help, encouragement, and knowledge. Good for you. Yes, let go and let them help you. That's why they are there.
I am relieved to hear that they are as caring here as there. o/
Posted by: Odette | Monday, 29 June 2020 at 08:26 AM
At last: full retirement. Hope you fool them again! B
Posted by: Bernie J Fleming | Monday, 29 June 2020 at 08:32 AM
Well I am sorry to be the only person that reads your blog that doesn't have anything good to say about hospice care. Unfortunately I was put in a position to have hospice care for my Mother. I don't want to go into too much detail on this post but I will never have hospice care for myself or any other loved ones.
Posted by: NANCY PIETRAS | Monday, 29 June 2020 at 08:37 AM
Hospice care was good when my mother died 20 years ago in BC Canada, but yours sounds way better than good. I hope that is an improvement everywhere and not just in OR. I’m glad they are taking such good care of you!
Posted by: ElizabethAnn | Monday, 29 June 2020 at 08:45 AM
So glad you've acquired these new helpers. My MIL was, like you, a tough cookie and had hospice helping her for over a year! The people were wonderful and adaptable as she was also not easy to assist, remaining perpetually irritated by life. You aren't like that. Be well!
Posted by: janinsanfran | Monday, 29 June 2020 at 08:55 AM
Your strength is my strength. You give so much to others take something for yourself.
Posted by: luci short | Monday, 29 June 2020 at 08:59 AM
I trained as a hospice volunteer while still in Tucson and it was an excellent program.
A year later was back in SW NY and we had hospice for my aunt and they were quite good as well.
Am so pleased you’re in safe and comforting hands Ronni, and can’t thank you enough for your sharing your journey. It’s important that we share our thoughts, feelings and experiences w death and dying.
Unfortunately too many doctors still refuse to do this or are so uncomfortable as to make it worse. I do think that’s beginning to change and it’s due to the courage of patients and families demanding they not shirk this aspect of medical care.
Posted by: SusanL | Monday, 29 June 2020 at 08:59 AM
I'm so glad you are taking advantage of Hospice care. We had it for my Dad in 1994, including the 24h LPN so that Mom didn't have to provide his personal care-he didn't want her to have to do that. We then again had hospice care for Mom's final 7 weeks-my sister and I took care of her. It is wonderful to have meds delivered/pd for, care equipment arriving/set up and a visiting RN for both of them. I had to argue w/Dad's RN who wanted to do things that were against his Living Well and as his DPA, it was my roll to defend his wishes. (She's a hospice RN for cryin' out loud!!!) Mom's RN was wonderful and supportive, checking in with us as well as with Mom during every visit.
I wish you comfort, managed pain and joy of life mixed in for all the time you have left on this earth.
Posted by: Elle | Monday, 29 June 2020 at 09:00 AM
I've only recently found your blog when I was looking for more information to gain knowledge of the 60+ baby boomers. The other day I read all of your postings of you throughout your life. You have certainly had an exciting and full life. Thank you for sharing such an intimate time in your life now.
From Portland, OR to Portland, ME (one of my favourite towns), wishing you all the love and the best of care to you.
Posted by: Sarah Katherine Gomm | Monday, 29 June 2020 at 09:17 AM
My brother received hospice care when he was dying of brain cancer. It only lasted a few days before he died, but they were wonderful. My SIL and I had been caring for him for several weeks but we became unable to bathe him and hospice stepped in to help. They also provided the morphine drops that eased his pain to the end.
Hospice became involved at the end of my mom's life almost a year ago at age 95. We couldn't tell her it was hospice because she was convinced that they existed to kill people and we couldn't convince her otherwise.
In any event, a nurse came daily to check on her and was always available by phone if we had questions. She was never rushed and took extraordinary care of her until her death.
I'm not religious but I believe hospice workers are angels on earth. It takes a lot of strength and love to do the work they do. To face death on a daily basis is not for the faint of heart.
We are eternally indebted to these magnificent people.
I'm glad you are having a positive experience and that you now have help for all the mundane tasks that have dogged you for months. Take full advantage of all their services.
Keeping you in my thoughts and hoping you have to renew the contract for at least the following six months. We need you in November! It won't be the same without you.
Posted by: Irma | Monday, 29 June 2020 at 09:26 AM
Ronni I'm so glad you have this fabulous support system. I have been an avid student of the hospice philosophy for many years. By the way, you have been a mentor to me and many others as a blogger. Keep the faith ^j^
Posted by: Janie Stafford Parker | Monday, 29 June 2020 at 09:35 AM
Like you, Ronni, I've always hesitated to ask for help because it feels like I'm imposing. Thank you for your details about hospice. Up till now I've had very little idea of what it entails. For example, I've always thought it involved moving to some sort of managed care facility.
Posted by: Susan R | Monday, 29 June 2020 at 09:41 AM
I learned many lessons from my father's home hospice experience 5 years ago in Michigan, but the two that I'll share here for readers is that in order to get the most benefit from hospice care you should not delay enrolling in it (ie, don't wait til the bitter end as my father did); and choosing to do hospice at home without lining up paid professional caregivers for the end days is a mistake (ie, the hospice personnel won't necessarily be there when you need them—which is all the time at the end, even just so other helpers can sleep).
Home hospice was a rather harrowing "live and learn" experience for my family. I know from my friends and the comments here it is usually a much more positive, comforting experience, which makes me hopeful my next encounter with it would go better. Ronni has already done the best thing, which is getting to know her wonderful hospice team at a calm time, so she can work with them to direct her own end-of-life care as she sees fit.
Posted by: ElKay | Monday, 29 June 2020 at 09:47 AM
Thank you so much for continuing to inform us while dealing with your own situation. What a wonderful and caring person you are!
Posted by: Rebecca Ann Magalhaes | Monday, 29 June 2020 at 09:53 AM
Once again, I have learned more from you and from your readers. Thank you to all.
Am thinking it would be nice to have the daily input continue--it's a great support group!
Posted by: Roberta M Cauthron | Monday, 29 June 2020 at 10:05 AM
Dear Ronni, I am so glad you now have the hospice care to rely on. It must give you great peace of mind to know hospice is there to take care of your needs. I had no idea that hospice provided so much assistance and care. And I think it is truly wonderful. I know. It must be difficult for someone as self-reliant and independent as yourself, but I hope our let go of that tendency and learn to request and accept the assistance you need. Let your nurse assistant change your bed and tend to your laundry. Before you do something physically or mentally draining, ask yourself would it be easier and safer if I asked for help? I’ve had to give up a lot of my independence the past few years, and to learn that it is okay and there is no shame in seeking help from others. May you have a peaceful and enjoyable week ahead, dear Ronni.
Posted by: Melinda Applegate | Monday, 29 June 2020 at 10:12 AM
Hey, Ronni ~~ Your news of today calls for a loud and cheery Woo Hoo !! Mind you, my experience with Hospice was as a "civilian" volunteer. A few yrs. ago, when we were in better shape, my husband and I washed dishes and kept the kitchen clean in the little bldg. dubbed Hospice . We have nothing but good things to say about the Hospice caregivers we got to know. Also, my sister had a marvelous experience with Hospice as her husband was dealing with his end.
Not to digress from your good news re: Hospice, today's topic (yes, good news), I just had an appt. with a doctor who only recently moved her practice to this area. At 89, I've met many a doctor, and this gal was so great at her job that it knocked my socks off and I came home with a Mary Poppins attitude, umbrella opened and flying several feet off the ground.
I rushed to open your e-blog and and said Oh, wow, Bonni has just had something astoundingly great happen in her life that she's looking at carefully. Hey, Bonni, I am confident that you will find happiness with those Hospice people....true heart warming happiness with a capital H.
This is what I'm sure of at this moment, pasting your good news on the same page with my super-good experience this morning ....... I am certain that sometimes Good Things Happen to Good People. Tuck all your questions under a soft pillow and Go For It.
I have not commented here often.........afraid I am not as smart nor as educated as so many of your followers, but I have a gut feeling that you/'e received some good news.
Posted by: Pat | Monday, 29 June 2020 at 10:18 AM
I am so happy you did overcome your reluctance to "impose" on others. I, too, am very hesitant to ask for help. I WANT to be independent , so usually suffer the consequences.
Your hospice team sounds wonderful..just as you deserve . Please take advantage of all the various help they can offer you,
One again, you are serving as " path finder" for those of us who follow you wisdom.
Thank you, Ronni. Sending a tsunami of love your way.
Posted by: Fritzy Dean | Monday, 29 June 2020 at 10:18 AM
Blessings Ronnie for smooth days.
Posted by: Kate R | Monday, 29 June 2020 at 10:22 AM
Ronni, your description of your initial contact with hospice was an eye-opener for me.
What I hope for is flexibility for you -- and it sounds as if that is a meaningful descriptor --- and possibly commonalities in addition to interesting differences between you and those who come to care for you --
Perhaps above all else, it would be wonderful if there was indeed a sympathetic bond formed between you and the hospice folk. For people like me, who are determinedly
independent, I worry only about a possible overabundance of care and attention paid
to me. I live a fairly isolated life as it is, but I cherish it. Am happy to have company -- and,
in the case of hospice, I would welcome the help and care as well -- but being on my own
is like an affirmation that I can manage.
Still, I very much welcome and admire your honest, frank, and wonderfully expressed description of it all.
I wonder how the hospice process will affect your normally fairly solitary life. Maybe it
will be an enriching experience all around--and given what an amazingly active mind you
have, it might well be an all-around good.
Above all, I wish you well. And of course you know how many people in this Time Goes
By world you have created, are thinking of and loving you.
Posted by: Ruth-Ellen B. Joeres | Monday, 29 June 2020 at 10:31 AM
Everyone I've known, who has received hospice care, has been very well served by the experience. My mother-in-law very much appreciated the assistance given, yet when she first heard her name used in the same sentence as "hospice" she was certain there was some mistake.
The mistake, I've come to understand, is waiting too long and receiving hospice care too late to be as effective as it is designed to be.
Posted by: Perspective | Monday, 29 June 2020 at 10:52 AM
Hecky pooh ~~ Just read my post and I am red faced to see "Bonnie" so many times, Ronni.
I really do know your name after so many years rushing to crank up my PC as time flies by.
I apologize and blame it on poor proof reading, as well as the double visioned eye discovered upon awakening following cataract surgery.
Posted by: Pat | Monday, 29 June 2020 at 10:55 AM
Ronni, so glad to hear you are getting help. My experience with hospice has not been good. While there were individuals who truly cared, there were many who were harried and over-scheduled who didn't have the time to deal with my parents when they were on hospice. The one social worker we had told me privately she was leaving the company because the management was so bad. She was never replaced. Neither of my parents were given a spiritual adviser.
My personal opinion is that once Medicare started paying for hospice, for-profit organizations started supplying hospice care, but with the need to make money and cut corners. I wish it weren't so, but that's been my experience. I'm glad to hear yours and others' experience is better.
On top of all that, my parents' doctor refused to admit they needed hospice until almost the very end. I suspect his Catholic background (and the Catholic facility for which he worked) made him reluctant to let them go when they needed to.
Posted by: Kathy Kaiser | Monday, 29 June 2020 at 11:15 AM
In my experience, Hospice workers are next to angels. I've worked with Hospice 3 times. First for the death of my father in 1999 in Western Nebraska, and I was amazed at how extensive the offerings were, just as you have described. They were all so calm, so reassuring, so willing to support the individual wishes and styles, in medical care as in psychological well-being and spirituality.
The second experience was in 2002 in Manzanita, OR for my husband. Again, comprehensive and compassionate. We had a few funny moment, even during that time, as when Hospice came for the first time and Freddryck said "Well, here she is, the angel of death." And when he needed a hospital bed, some months later, he returned to that theme, saying, "Well, here it is, the chariot of death." We learned during that time that there is always a place for humor, even in, or maybe especially in, end of life times.
My last experience was for my dear brother, in 20919, in Scottsbluff Nebraska, and again, although the time was much shorter, only a few days, the care was exquisite.
I am so glad you have Hospice, and I'm so glad you are willing to use the services, even though there is a little discomfort in all that help; I am the same way, but as I have been reminded often, when you are the sort of person who helps others, it's good to remember that depriving others of the opportunity to help you just isn't fair, somehow.
Thank you for your strong spirit and equally strong voice. I am so grateful for this blog.
Love and Light to you and all.
Posted by: Lola Sorensen | Monday, 29 June 2020 at 12:07 PM
My husband was in inpatient hospice for the last 5 days of his life. There were supportive, kind, thoughtful, caring people the whole time. The care was wonderful and they were helpful to me and other loved ones.
Posted by: MARTHA GOTTLIEB | Monday, 29 June 2020 at 12:10 PM
Ronni, I am pleased to read that you have such wonderful hospice support. I, we, care about you and know that you deserve the best care at this stage.
My Mother died in 1999 (lung cancer) and had hospice care towards the end of her life. I cannot say enough good things about the experience for her and for me (I was the only family with her for the last 13 months of her life).
The day the hospice nurse arrived to start the process was amazing. She was with us for hours: asking questions, taking notes, making phone calls to order drugs, equipment, etc. I was amazed that items started arriving before the nurse left our house. Before leaving us on that first day, the nurse assured us that they were always a phone call away, and I found that to be true.
I was afraid my Mother would be overwhelmed by it all, for she was a bit of a loner. But the hospice personnel were fabulous with her and with me. My Mother was afraid of going into hospital as her disease progressed; she wanted to die at home where she had lived for 41 years. The hospice nurses assured her, and me, that they would do everything in their power to make that happen. And so my Mother did die at home; peacefully and lying in the bed where she had slept for all those years.
Medical personnel, in general, are pretty fabulous. In my opinion, hospice personnel are even a bit more special.
Posted by: Shirley Thompson | Monday, 29 June 2020 at 12:14 PM
It's kind of weird, but your post made me so happy, tearful, but really happy, to know you will have such good, even loving care! And more ease now, not so much to deal with. I hope that's a blessing for you. A friend of mine used to be in charge of Hospice for this area, and she is, in all circumstances, one of the most generous, loving people I've ever met. Since retiring, she's taken on the Poor Peoples' Campaign, and working to make sure Trump is not re-elected. Plus she's a great dancer. So I believe, unless I hear from you otherwise, that you are in the best of hearts and hands. Blessings, always.
Posted by: Salinda Dahl | Monday, 29 June 2020 at 12:45 PM
Thank you for writing this, Ronni! I am so glad you now have a team of kind, compassionate and skilled folks to support you. You are so fortunate because, as I've seen over the years as a hospice volunteer, too many people come into hospice care very, very late in the progress of their illness. There's so much paperwork, and just, STUFF, to deal with in those first days that it can be overwhelming when there isn't the luxury of time to get to know the team and everything they can do for you.
I became a hospice volunteer in large part because of the excellent experience we'd had when my mother was ill in 2003. True to her character, my Mom defied everyone's expectations and did have to be recertified for coverage a couple of times. So we had a chance to get to know her team. I will always be grateful to them; there were times when they really kept me from feeling helpless and despairing, educating my family about her illness and giving us the closest thing to a road map about what to expect in times ahead. We do not come into the world knowing how to deal with these things, so I cherish the education and support we had.
Your team is lucky to have you and I imagine they realize that. Of course as a strong and fiercely independent woman, you may recoil at the idea of asking for help. But now is the time. It's a new avenue of relationships; it can be a very comforting partnership. That is what I hope it will continue to be for you. And I am hoping that we will all celebrate with you in November when we usher in a new day in this country.
Posted by: Ellen Rand | Monday, 29 June 2020 at 01:17 PM
Blessings on you! We had Hospice for my husband and it was a godsend. May it be the same for you!
Posted by: Jean Shriver | Monday, 29 June 2020 at 01:17 PM
Getting into hospice care early-on is really the best way to do it. The caregivers can see who you are and the life you have lead before you are no longer able to do that. Be honest with your caregivers at all times. They are trained to be good at their job, but you must let them know what and how you are feeling if they are to do a top-notch job for you. Sounds like you have a good team.
Posted by: dkzody | Monday, 29 June 2020 at 01:37 PM
Ronni, I'm so glad you have these services to make your life easier. To those couple of commenters who had bad experiences with hospice, I would say to try a different company next time after getting recommendations for a good one. Hospice was life-saving (mine) when my parents were in their last months. They provided all the services for them that you have described today in TGB and more.
They gave Mom baths, massages, and trimmed her toenails. Hospice volunteers visited with therapy dogs she could pet. They helped her get books on tape and when she couldn't see, put raised dots on phone buttons, lights, thermostat, microwave buttons so she could feel them. They provided a wheelchair, and when it became necessary, they supplied incontinence products, a hospital bed, a bedside commode.
Another service they provide is support to the family. We could, whenever we wanted, talk with a spiritual advisor, a social worker, or their RN caretaker. The nurse always called me to tell me how they were doing if I weren't there when she visited. I could call her anytime, and she supported me when after Dad died Mom got so demanding that , for my own health, I occasionally had to take a "vacation" from Mom for a week. They provide spiritual or social worker support for the family for a year after the patient's death.
They gave us information on what to expect when someone is dying - the changes we would see at each step towards the end. When death was imminent, they provided a death doula who spent all night with Mom so we could go home and get a few hours of sleep. When we came back the morning of her death, the last hours were made easier with the nurse telling us about hearing being the last to go, that we should talk to her and stroke her hands or cheek because she could feel the touch.
I truly don't know how my parents and we, the family, could have gotten through their last months without the caring help of hospice. I'm so glad, Ronni, that you've found them and gotten hooked up. We get help from various entities throughout our lives when we're not an experts on something. Why should dying be any different?
Ronni, take care. Your blog has been a thought-provoking part of my life for years. I wish you a peaceful journey over the next months.
Posted by: EVA | Monday, 29 June 2020 at 01:40 PM
Oh Roni, while part of me is sad to hear this news, most of me is OVERJOYED that you have the support of hospice!!
When I was living in California, I worked as a hospice nurse for several years and it was some of the BEST nursing care I have ever provided.
While I have missed seeing you in infusion, I am thankful to have this blog to read and keep up with you.
Best wishes and LOTS of love to you!!
Posted by: Cheryl L Nicponski | Monday, 29 June 2020 at 02:00 PM
Ronni. So glad you have such a first class hospice team. I just hope if or when my husband and I may need hospice care we are as fortunate.
I can’t stand the thought that one day Ronni Bennett will not be posting on Time Goes By.. you are a precious jewel and your thoughts and advice have been so helpful..
Posted by: Janet(aka Chancy | Monday, 29 June 2020 at 02:04 PM
I was blessed to work as a Social Worker in Hospice back in the day. The RNs, the MDs, the Aides and Volunteers were all compassionate people who would go to the wall for our patients. The fact that Medicare could see that caring for a dying person in their own home was an economic reality, even after providing all equipment and drugs, was astounding.
Providing help to patients who are facing their final journey is not a niche that everyone can fit into. But those who are called to do so are dedicated to this field; they know that the outcome will not be changed. They are content to provide whatever help they can to make the last weeks and months good ones.
My job was to support the family as they took on an role that was unfamiliar; none of them had previous experience in this; they were filled with fear and apprehension; no one could tell them how long their loved one would last. But they came through. And when death came, I continued to provide support to the family as they began the grief journey.
And just so you know, humor was very important to the team. Our meetings often included loud laughter; a necessary release.
Now, 20+ years since I retired, I still think of those families as I pass their homes.
Posted by: Mary Alice - Mairet | Monday, 29 June 2020 at 02:55 PM
My family has several experiences with Hospice as well as friends. My Dad was in Hospice briefly after a severe stroke he was shifted to a Hospice bed in the hospital then transferred to a hospice bed in a nursing home. My husband had in home hospice when he was dying. They took over all the medications and necessary equipment. They provided a volunteer who sat with him when I needed to go to the store and so I could go to church. Next it was hospice for my Mother where they came to apartment in her retirement community. Three years ago my sister in law needed hospice care as well as around the clock care so she was in an assisted living facility Oregon City. I thought she had excellent care and a very nice room that opened up into an interior courtyard so she had a view of the outdoors.
I hope with their care you will have the transition from this life you need.
Posted by: Julie B | Monday, 29 June 2020 at 02:56 PM
My mom was in hospice care in her memory care place, for the last month. The people who work for the hospice programs seem to believe in the beauty and awe of death, and in our experience they supported us all in the most peaceful, spiritual, transparent fabric of the universe process we could have imagined. Because they guided us so well, in the end all three sisters lay together on our mother's bed with her as she breathed her way into death.
I am so glad you have this team to be with you.
Posted by: Lisa | Monday, 29 June 2020 at 02:57 PM
Had at home care from the NW Ohio Hospice for my father in 1987 and then for my mother both at home and in Hospice for her last week in 2005. They were wonderful. I intend to use them as well if and when I need their help.
Posted by: Frances Baumann | Monday, 29 June 2020 at 03:23 PM
As a geriatric Nurse I can say without reservation. that Hospice is an amazing godsend. They aim to make the patient feel as comfortable as possible and strive to provide a peaceful passing. No judgements. Always open to educate and welcome questions.
As a daughter I was involved with easing my Dad’s passing while he was on a Hospice Unit of his hospital. They didn’t question my concern for his discomfort and provided the Morphine he needed to ease his passage so he could peacefully let go of his body.
You made a great choice, Ronnie!
Posted by: Dianae Weeks | Monday, 29 June 2020 at 04:15 PM
I have no experience with hospice but found this poem that touches a soft spot in my hardened soul.
"The Merciful Hours"
Because we have known Death come the hard way —
knock at the door in the dark of the night,
all of us breaking with the shock of day —
this precious time to sit with our living
while they enter their peace, is pure gift.
It falls like healing light on our waiting
for heaven, or nothing, or another lifetime,
be we lovers or father or mother
or child to each other. Our mortal dream
is to step out together the long road home,
hand fast in hand whatever the weather,
whatever the twists and turnings to come.
So: to the vigil bring candles, bring flowers,
heart’s gratitude for the merciful hours.
Gifted to the Irish Hospice Foundation to commemorate it's 30th anniversary.
Posted by: John Brayton | Monday, 29 June 2020 at 04:21 PM
This is suddenly becoming very real. While you were writing about what might come to pass it was an abstract concept, but you've been my favorite teacher of what it's really like to get older and a blogger for fifteen years, and now you're telling me you're getting ready to move on?! Of course, it isn't about me.
My brother-in-law's mother had home hospice in his home with my sister, and it was awesome. Most of the time she was almost invisible, ever-present but working in the background. At the end, she came over to my brother-in-law to quietly tell him it might be time to say his good-bye and it was. I should go so peacefully.
Resist a little. There's no rush, and you will be missed.
Posted by: Harold | Monday, 29 June 2020 at 06:08 PM
I’m reading this late Monday evening and I haven’t read all the comments yet (but I will). But I just wanted to say that I am happy you have so many new professionals to help you and I hope that all of them treat you with the kindness and respect you so richly deserve. And I hope they are there for way longer than six months.
Posted by: Patty-in-New-York | Monday, 29 June 2020 at 07:33 PM
I'm very sorry I've been late to your blog Ronni (been a little under the weather). Your grace & dignity throughout this process has really been a beautiful thing. I don't know what to add that hasn't already been said by all your kind readers, but I'm just very glad to know you have people in your physical corner as well as your online one. Oh boy....
Posted by: Doug M | Tuesday, 30 June 2020 at 06:56 AM
Dad had hospice the last 2 months of his life. He had terminal lung cancer. He had a partially disabling stroke 2 years before and a heart attack a few months before the lung cancer. He was doing well, actually, until the inoperable lung cancer appeared. The 3 tumors were in a good location for surgery but he was in frail health and surgery was not recommended.
I worked with a geriatric social worker who I found on my own when Dad had his stroke. She was great. So helpful. So practical. The first hospice did not show up for their appointment. The second hospice was great. They offered music thanatology. They also provided grief counseling after Dad died.
I didn't like losing Dad's primary physician. I also did not like one of the drugs they provided in their "kit". I later read it was not recommended for older people. It turned Dad into a zombie the last weekend he was alive. But, their services were highly appreciated during an especially stressful and overwhelming time.
Posted by: Natasha M | Tuesday, 30 June 2020 at 07:56 AM
I so appreciated reading this post yesterday as I sat at my folks place waiting for them to return from the hospital and waiting for a visit from the hospice nurse. My dad has had heart problems for years, and now it’s weak to the point of needing hospice.
We know what a blessing hospice can be as we relied heavily on them 32 years ago when my sister was dying. Reading your story and the information you provided was so reassuring at this time. Thank you for that.
I have enjoyed reading your blog over many years and appreciate your honesty in sharing the details of your own challenges these last few years. It is a blessing when you can impact the lives of so many with words. Wishing you ease in your journey!
Posted by: Karen Kennedy | Tuesday, 30 June 2020 at 08:07 AM
Thank you Ronni for all the years of sharing laughter, crankiness, joy, wisdom, confusion, just plain sharing you life. It has helped me live mine. Wishing you ease and comfort and stardust on this next journey.
Posted by: Meredith Adami | Tuesday, 30 June 2020 at 09:39 AM
Dear Ronni, when I read that you're going into hospice, my heart hurt, because of what it signifies. But you are still with us now, and I'm grateful for every post and every thought you are sharing. So much of what you've written all these years about what it's really like to get old, and now what it's like to be in hospice, I for one have never seen from anyone else, and it's immensely comforting, as an aging person, to receive all the information you impart, and to know that I'm not alone in this experience, which is also magnified by the wonderful community here. It's so odd that old people, beyond talking about their health issues, don't share with younger people what it's really like to be in this stage of life--maybe because they don't seem to be interested. Because of that silence, I had no idea when I was younger what it was going to be like, and so many things have been huge surprises to me, like the fact that I still feel 30 inside. When I looked toward old age when I was younger, I saw my life kind of drop off a cliff or disappear into a murky, unknown terrain. So I'm committed to talking about my actual experience of aging to anyone who is interested, and this is the great gift you give us with every post. I've realized that aging--life--is a continuum. We are still ourselves, maybe even more so, as we age. I'm grateful for your friendship--for you do feel like a wise friend--and everything you share with us.
You probably already know about this, but there is an extraordinary documentary from 2016 of a conversation between Ram Dass and Timothy Leary about death (Leary had cancer at the time), LSD, spirituality, life, etc., called "Dying to Know." I highly recommend it.
Take good care, dear Ronni.
Posted by: Elissa Rabellino | Tuesday, 30 June 2020 at 02:30 PM
Great insights on hospice for all of us to have whether we need it at the end or not. I've always been a no-nonsense, when it's over it's over type, but I may not be that lucky so I'm glad to read that the great majority of hospice experiences have been positive.
Posted by: Elizabeth Rogers | Tuesday, 30 June 2020 at 10:01 PM
I'm so glad that you can enjoy your team. Hugs from the Corona virus saturated south.
Posted by: MageBailey | Saturday, 04 July 2020 at 08:43 PM